North American Agencies Partner During National Scleroderma Awareness Month to Grow "Know" CommunityThursday, June 5, 2014
By: Christina Relacion

The primary partners are Scleroderma Foundation, Scleroderma Research Foundation and Scleroderma Society of Canada.

SAN FRANCISCO, BOSTON and HAMILTON, Ontario, June 5,
2014 - Some of North America’s leading scleroderma advocacy
and research organizations today announced they are joining forces during
June’s Scleroderma Awareness Month, with a social media campaign to compel more
people to learn more about the little-known and often misunderstood disease.

The campaign is
named “Hard word. Harder disease.” The theme touches on the complexity of the
word and the gravity of scleroderma, a rare disease with no known cause or cure.
It will run across partner Facebook and Twitter channels (#hardword) throughout
the month of June, with visuals and copy that educate and challenge people to
take a pledge to learn more. A microsite, sclerodermaaware.org,
serves as the landing page for the pledge and general information about
scleroderma with links to additional resources.

“Individually
our foundations are working hard to raise awareness, provide support and
critical funds for research,” said Amy Hewitt, executive director for the
Scleroderma Research Foundation. “Collectively, in the United States and
Canada, by uniting our voices and social media strategies, we stand to make an
even greater impact.”

Scleroderma is
a crippling autoimmune disorder characterized by a thickening and hardening of
the skin that is so severe, it steals away the use of patients’ fingers, hands
and limbs. As it advances across their bodies, the uncontrolled growth of
fibrous tissue can damage patients’ hearts, lungs and other organs, often
leading to a prolonged and painful death.

“Not only do
scleroderma patients struggle with a disease, but they struggle with a disease
that not many know about,” said Maureen Sauve, president of the Scleroderma
Society of Canada. “Isolated and alone with scleroderma, many patients feel
they suffer in silence. Together during this campaign, we hope to broaden our
community.”

The campaign
will leverage key opportunities throughout the month, notably World Scleroderma
Day on June 29. The campaign also complements a digital billboard on 42nd
Street in New York City that will run June 1 to July 15.

“Our strategy
is to compel those who are not immediately impacted by scleroderma to relate to the
disease, and therefore be more likely to empathize,” said Robert J. Riggs,
chief executive officer for the Scleroderma Foundation. “To this end, the messaging
will attempt to make an emotional connection with anyone who encounters
it—particularly those who may know little or nothing about it.”

The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our primary goal is to raise funds for our three-fold mission of support, education and research. The foundation has 20 active chapters and 160 support groups across the country.